The hospice partnership

Hospice begins, almost always, with a conversation that the couple has been avoiding. A doctor — sometimes an oncologist, sometimes a primary care physician, sometimes a hospitalist the couple has known for three days — says some version of: we are no longer treating the disease, we are treating the person. Gawande has written about how badly American medicine handles this conversation, how often it arrives late, how often it is delivered as a defeat rather than a transition. The couple sits in the consulting room and hears the word hospice and understands, often for the first time, that the partnership has entered its last chapter. The drive home from that appointment is one of the quietest drives of the marriage. The hospice partnership begins in that car.

A hospice nurse comes to the house, usually within forty-eight hours of the referral. She — it is usually she — sits at the kitchen table with both partners and asks questions that no one has asked the couple before. What does a good day look like. What are you afraid of. What do you want us to do if. The intake nurse is performing a kind of triage that is not medical but relational; she is reading the partnership to understand what it can carry. Couples often report that the intake visit was the moment hospice stopped being an abstraction and started being a presence. The nurse leaves a folder on the counter. The folder will sit there for the rest of the dying.

At some point a hospital bed arrives, usually delivered by two men in a white truck, and is set up in the living room or the den. This is one of the harder thresholds of the hospice partnership. The marital bed, which has held the couple for thirty or forty years, is no longer adequate; the dying partner needs rails, an adjustable head, a pressure-relieving mattress. Many well partners report that the night the hospital bed arrived was the night they understood, in their body, that their spouse was going to die. Some couples sleep apart from that night on. Some pull a recliner next to the new bed and sleep there. The geometry of the partnership rearranges around the new piece of furniture.

The well partner becomes a pharmacist. There are pills for pain, pills for anxiety, pills for nausea, pills for constipation caused by the pills for pain. There is liquid morphine in a small bottle with a dropper, and the well partner must learn to administer it under the tongue every two hours when the dying partner can no longer swallow. The morphine question — am I giving too much, am I hastening death — is one of the moral knots of the hospice partnership. Hospice nurses are patient with this question. They explain, often more than once, that adequate pain control does not shorten life and that under-treatment is the more common error. The well partner learns to trust the dropper.

A good hospice team is a small ensemble: a nurse who visits two or three times a week, a home health aide who comes to bathe the patient, a social worker who handles the paperwork and the family dynamics, a chaplain who comes if wanted, a volunteer who sits so the well partner can go to the grocery store. The couple, who may have been intensely private for decades, must now let strangers into the house on a schedule. Most couples report that the strangers became, within days, something other than strangers. Hospice workers self-select for a certain kind of presence, and the household absorbs them with surprising speed.

The children come home. They come from across the country and from across town. They bring their own marriages, their own grief, their own unfinished business with the dying parent. The hospice partnership must absorb them without being displaced by them. This is delicate. Adult children sometimes try to take over — to manage the medications, to overrule the well parent's decisions, to relitigate childhood inside the dying room. The well partner has to hold the center: this is still our marriage, this is still our dying. Hospice social workers are often the ones who name this dynamic and who help the family settle into roles that support rather than supplant the couple.

People want to come and say goodbye. Old friends, neighbors, former colleagues, the pastor, the next-door child who is now forty. The well partner becomes the gatekeeper, and gatekeeping is harder than it sounds. The dying partner has limited energy and limited hours of lucidity, and not every visitor is worth a visit. The well partner must learn to say no, sometimes to people who have known the couple for decades. Hospice teams often advise: the dying person gets to decide who comes in and for how long, and if the dying person cannot decide, the well partner decides on their behalf. This is one of the last protective acts of the partnership.

Even in late hospice there are intervals of clarity, sometimes called terminal lucidity when they happen near the end. The dying partner, who has been mostly asleep for days, wakes and is themselves — wants to talk, wants to eat a bite of something, wants to see the dog. These intervals are unpredictable and precious, and the well partner learns to drop everything when they happen. Couples report saying important things during these intervals, things that had been waiting. Maggie Callanan, who spent decades as a hospice nurse, has documented how often the dying use these intervals to communicate something specific, sometimes in metaphor, and how often family members miss it because they are expecting ordinary speech.

Byock's frame — forgive me, I forgive you, thank you, I love you — is not prescriptive but descriptive. In the hospice partnership these sentences tend to surface on their own, sometimes haltingly, sometimes in fragments, sometimes through tears, sometimes in a tone the couple has not used with each other in years. Not every couple says all four. Some couples cannot say forgive me; some cannot say I love you out loud and say it through hand-holding instead. Hospice chaplains are trained to recognize the four things in their non-verbal forms. The partnership does this work in whatever register it has available.

The last days are often a vigil. The dying partner sleeps most of the time, breathing changes, the well partner sits beside the bed and does not leave. Family members rotate in and out. The hospice nurse visits more often. There is a particular quality of attention in a vigil that is unlike any other attention in a marriage — concentrated, undistracted, almost ceremonial. Ostaseski has written that the dying often wait for permission, that they hold on until a particular person arrives or until a particular person leaves the room. The well partner sometimes has to say, out loud, it's okay to go. This is one of the most difficult sentences in the language and one of the most generous.

When it happens, it is usually quiet. Breathing slows, lengthens, stops. The well partner notices, often before anyone else in the room. The hospice nurse is called and arrives within an hour. There is no rush; the body can stay in the house as long as the family wants. Many hospice teams encourage the family to take their time — to wash the body, to sit with it, to say what needs saying. This is a deliberate counter to the medical death, which removes the body within minutes. The hospice partnership ends in the room where the marriage has been concentrated, and the ending is, for many couples, less violent than they had feared.

When the body is finally taken — usually by two people from the funeral home, often in the middle of the night — the well partner is left in a house that has been organized for months around a dying. The hospital bed is still there. The medication is still on the counter. The folder from the intake nurse is still where she left it. Hospice does not abandon the well partner at this point; bereavement services continue for thirteen months, with calls and check-ins and group offerings. But the partnership, as a partnership, has ended, and the surviving partner now begins the much longer collective work of being a widow or widower inside a community that mostly does not know how to help.

1. Gawande, Atul. Being Mortal: Medicine and What Matters in the End. New York: Metropolitan Books, 2014. 2. Byock, Ira. The Four Things That Matter Most: A Book About Living. New York: Free Press, 2004. 3. Ostaseski, Frank. The Five Invitations: Discovering What Death Can Teach Us About Living Fully. New York: Flatiron Books, 2017. 4. Callanan, Maggie, and Patricia Kelley. Final Gifts: Understanding the Special Awareness, Needs, and Communications of the Dying. New York: Bantam, 1992. 5. Miller, BJ, and Shoshana Berger. A Beginner's Guide to the End: Practical Advice for Living Life and Facing Death. New York: Simon and Schuster, 2019. 6. Byock, Ira. Dying Well: Peace and Possibilities at the End of Life. New York: Riverhead Books, 1997. 7. Lynch, Thomas. The Undertaking: Life Studies from the Dismal Trade. New York: W. W. Norton, 1997. 8. Doughty, Caitlin. From Here to Eternity: Traveling the World to Find the Good Death. New York: W. W. Norton, 2017. 9. Bonanno, George A. The Other Side of Sadness: What the New Science of Bereavement Tells Us About Life After Loss. New York: Basic Books, 2009. 10. Prigerson, Holly G., et al. "Prolonged Grief Disorder: Psychometric Validation of Criteria Proposed for DSM-V and ICD-11." PLoS Medicine 6, no. 8 (2009): e1000121. 11. Lopata, Helena Z. Widowhood in an American City. Cambridge, MA: Schenkman, 1973. 12. Gawande, Atul. "Letting Go." The New Yorker, August 2, 2010.